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The dignity of risk for the disabled

By Peter Gibilisco - posted Thursday, 24 July 2014


Individuality and social inclusion for my future my choice

My dilemmas and my conquests have increased my conviction that somehow we-all of us-need to find a way to view and support people with disabilities in proactive and caring ways. Taking equal opportunity as an overarching principle for a way of life that is flexible enough to assist diverse disablement in diverse ways. We need simply to face up to people with severe disabilities as people. We need a flexible and empathetic approach, aligned to an appreciation of the diverse social abilities, responsibilities and opportunities that become evident when people interact with each other as fellows, as equals.

The medical and social model models of disability

Today disability is studied in two ways. The first is the medical model of disability, which looks at disability as a medical illness that either has to be medically cured at an individual level, or controlled to allow the person with a disability to become a normal functioning member of society. Secondly, there is the social model of disability that understands disability to be the outcome of social, political and economic processes, which have an impact on the lives of people identified as disabled, as well as on the lives of people who are not identified as disabled.

Whereas the medical model focuses on the individual as a "patient" by contrast, the social model focuses on the infinite social processes and dynamics of disability. The social model is empathetic to the view that disability discrimination and prejudice is made stronger by a lack of accessible and socially and economically rewarding information, technology, architecture and events.

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The antiquated view of the medical model has created persistent stenotypes and resultant stigma about "people with disabilities". The medical model believes that "people with disabilities" may never attain acceptable social norms without a complete cure. This leaves those that cannot be cured, with an impossible dilemma, which leads to the social, economic, political and cultural marginalization of many "people with disabilities". While the care/support given to people with disabilities has increased over recent years I'm concerned by the trend towards standardising disability services. In order to realise the infinite possibilities of individuals with a disability, support must be provided on an individual basis

My own experience reveals the failure of the medical model of disability. For others and me it has been a source of stigma and discrimination. For example, I have been pitied, conveniently verbally misunderstood, looked down on for my supposed abnormal structure and characteristics, and characterised as a loser.

The social model of disability by contrast challenges this stigma and discrimination. The social model has the potential to roll back societal prejudice and misguidance and support "People with disabilities" to attempt and possibly achieve their goals free of harassment stereotypes and discrimination.

I believe, the social exclusion of people with disabilities occurs because most people are still operating from the medical model of disability. They have not been exposed to the social model of disability. My successful completion of a PhD is proof of the veracity of social model of disability

Dignity of risk should be a disability right

There is a concept called 'dignity of risk'. This refers the right of everyone to pursue activities that have a level of risk, for example, going swimming or surfing. However, the risk can be managed by, in this case, checking the conditions before going, and going with a friend. So does this mean that a service provider or carer of someone with a disability has to balance the risk to the disabled person and the right of that person to pursue happiness for them? People with disabilities are usually in the best position to instruct their own support services. Dignity of risk should mean that support services encourage the disabled to make their own informed choices.

Stereotyping and discriminatory attitudes can make it even more difficult for a person with disabilities to be a 'normal person'. It follows that the disabled person should decide for him or herself what their own 'dignity of risk' level is. Recognition of this need will facilitate a better relationship between the support workers and the disabled.

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The danger is that the principle dignity of risk is something that can be over-ridden-and the disabled persons' support turned into a legal tug of war. Sometimes people with a disability are prevented from making certain decisions or participating in activities because other people judge these to be too risky. How risk is perceived is unique to us as individuals and management of risk should be tailored to a person's individual circumstances.

Standardising and the need for an individualised approach

For example, when I lived in my own place, I used a sling. When I moved into Shared Supported Accommodation two years ago I was told that it did not meet the standards of the House. It was explained to me that another person using this sling had died; it was deemed unsafe for that person therefore it was unsafe full stop. But I had successfully used the sling for fifteen years.

I'm concerned that disability services needs to avoid processes, which standardise disabilities. Each person needs to be understood and respected in his or her own terms. I have had 15 years experience with my sling and I should have been allowed to demonstrate its features, to emphasize how it posed no great risk for me.

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About the Author

Peter Gibilisco was diagnosed with the progressive neurological condition called Friedreich's Ataxia, at age 14. The disability has made his life painful and challenging. He rocks the boat substantially in the formation of needed attributes to succeed in life. For example, he successfully completed a PhD at the University of Melbourne, this was achieved late into the disability's progression. However, he still performs research with the university, as an honorary fellow. Please read about his new book The Politics of Disability.

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Creative Commons LicenseThis work is licensed under a Creative Commons License.

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